Dec 29, 2012

Year in Review

Although I don't write a Christmas letter or anything of the sort, I figure my dear blog readers tune in from time to time throughout the year and are probably all too aware of the health goings-on in my life. So I will try my best to keep this brief and not too negative. It has been one heck of a year to say the least!

Let me start with the good. Certain aspects of my health have improved significantly. My resting heart rate is good! Normally anywhere between 56 and 66 beats per minute on any given day. And there have been many days where my standing heart rate hasn't been so bad either! (70's, 80's, 90's, I rarely reach the 100's anymore!) I am always thrilled to check my blood pressure monitor and see relatively normal numbers there too. It helps me breathe easier when I think about how those same numbers used to look a year ago. Can I say my POTS is gone? Well, no. There are days when my HR still spikes upon standing, I still get the occasional dizzy spell and brain fog seems to plague me on a daily basis. But when I compare my symptoms and my numbers to what they were 5 years ago the difference is dramatic. And there are even some days where I even feel somewhat normal.

In terms of chronic pain and limitations however, this has been the worst year of my life. The TMJD pain is unbearable half the time and it impacts my life severely. I have had to drastically modify my diet to soft foods exclusively and master the art of being quiet which has proven very difficult both emotionally and functionally. It is really tough to not be able to make phone calls to doctors or insurance companies. Not to mention not being able to speak to friends and family very often. I have had to shell out $1300 for a home ultrasound machine like the kind they used on me in Physical Therapy after my insurance company cut off physical therapy completely. It is about the only thing that brought me any real relief. I am currently going through the appeal process with my insurance company about covering the ultrasound machine as durable medical equipment for a chronic condition.

A local neurologist also thinks Botox injections would help quell the muscle spasms in my jaw and facial muscles, but insurance does not want to cover that either because it is not FDA approved for anything other than the treatment of migraines (which I am not having). Although my medical insurance does cover TMJD, they certainly don't seem to cover any of the treatments that have worked for me. So the battle continues. Sadly, this type of battle has become all to familiar to many of us. Having to fight for the basics all the while fighting our own battles against our ailing bodies. My wish for the new year is that less people will suffer and struggle with their insurance companies. That we will not have to fight as hard to receive adequate treatment and relief.

May my friends and readers experience improved health and  relief from chronic conditions in 2013. Keep on fighting the good fight and never never never give up!


  1. I didn't know your insurance cut off physical therapy - my gosh! :( Anyhow I am glad to see this post from you because it's good to hear from you in any way shape or form! I want to send you a special post-Christmas franken but I need to talk with you and figure out a shade you don't have and will love... I miss you!

  2. I have TMJ as well, and its a very horrible thing to live with. I will put your blog on my favorites on my computer, and its nice to know we are not alone. Richard

  3. Hello:

    I just sent you an email regarding an interview I did with a woman who has dysautonomia. I am hoping you will post a link to the interview in a future blog post. Thank you for your consideration.


  4. Argh..I forget that blogspot requires code to hyperlink the url. Lets try this again:

  5. I just saw your email and would love to feature your link in a future post! The benefits of pet ownership for chronic illness sufferers are definitely profound.